New to all this...

Hello, this is Graham, I'm 45 years of age and living on Merseyside. I lecture in electrical and gas engineering at a local college and also run a small maintenance company along side this. Well I did until recently until my life appeared to turn upside-down. I have always suffered from asthma since a child and around September to December of last few years suffered terribly from sinusitis for months on end with antibiotics not seeming to shift the problem. For the last few months I was finding myself dozing at my desk around 4pm when the students had left, they kept me awake enough when they were there sure enough. About 4 weeks ago I broke out in mouth ulcers which I put down to stress, then joints started to hurt. I went to see gp who booked me in for blood tests for arthritis for the following week. That weekend I took a turn for the worse and started coughing up blood and red spots appeared on my feet. I went to A&E Sunday, I had chest x.ray, damage was evident and diagnosed with pneumonia, given antibiotics and 30 mg prednisone but the red spots had the doctor puzzled so booked me in for a follow up appointment on wednesay of the following week. That was wednesay 19th April I think although the last 4 weeks are a bit of a blur. A doctor mentioned vasculitis immediately seeing my condition, spots and blood tests and an ANCA rest was ordered. I was kept in overnight and first thing Thursday consultant tells me it's GPA vasculitis with sinus, lung, skin and kidney involvement. I was moved to renal ward and given three days of prednisone infusion 1000mg, I was passing a lot of protein. The junior doctors told me that they were not happy until they had vasculitis tissue from a biopsy, a skin sample was taken from the spots of my feet and they deliberated for over a week to take a long and or kidney biopsy. The skin sample a month later has not yet returned results. They started me immediately on oral cyclophosphamide at 50mg then upped it to 100mg, I was taken off the iv prednisone and given 60mg per day tablet which I still am taking daily. A week and a half later they took a kidney biopsy on the Friday and my blood tests were stabilising so they let me go home over the weekend as long as I was back by bedtime. Then on the Tuesday the results of the biopsy came back and it was mixed news, the vasculitis had not entered my kidneys, yet, but I was passing protein and my readings were around 72% of function with creatine around 100 mark. What they found was ipg nephropathy cells which is yet another auto immune desease usually very slow degeneration over time. Consultant said this would normally be treated on it's own with lifestyle and possible bloodpressure medication and avoiding diabetes to slow it down. However given the "clinically likelihood" of vasculitis in my body they are keen to push on with the cyclophosphamide treatment, taken off the oral after 2 weeks and ive had the first of 10 pulses over a six month period. They refuse to do a lung biopsy on me due to risks. The chemo makes me a little tired but I'm not sick at least. Desperately fighting the appetite inducing prednisone and walking for exercise around an hour per day. They keep saying they caught it early, I'm concerned as I have been diagnosed with two kidney threatening conditions now so a lot on my plate. I was concerned looking at other websites about my outlook, particular the USA sites about wegeners but this site is very reassuring and support is there. I'm just watching what I eat now and keeping myself relatively fit and staying away from colds amd coughs etc and have to trust in the medication working. I aim as a lot of you have to get this thing into remission and then I'll have to address the ipg nephropathy as another issue. Any advice on coping with this initial round of treatment will be welcome and thank-you for allowing me to introduce myself and share my story with you so far.

[MAC12]

Hi Graham, I was diagnosed with GPA around three years ago. Similar symptoms to yours and started initially on oral cyclophosphamide before being switched to infusions, also on 60 mg pred. Gradually came under control after 4-6 months which seems to be fairly typical. If you can just hang in there every chance you will be fine. With regard to lung biopsy I would have thought they would be able to get decent idea by doing a scan. The main thing is though to make sure you are being treated by vasculitis experts - some hospitals much better than others at providing this expertise. Also they need to have joined up approach if there is different organ involvement i.e. kidney, lung, etc.. You should also be able to get excellent advice off VUK.. Good luck.

[Hidden in reply to MAC12]

Many thanks for the reply, I am now seeing doctors under ENT, renal and rheumatology, plus an interesting appointment with a "systemic flair up doctor" this Thursday I seem to be getting well looked after. Thanks again

[DevonLottie]

Hi graham, welcome to the group although I'm sorry you need to be here. I too have gpa and have had it for 17 years. You will find up to date and accurate information on the vasculitis uk website which I'm sure will give you reassurance. It sounds that you are getting the right treatment from your care team but gpa is a very rare disease and there are only a few hospitals around the country with specialist knowledge of treatment. If you need it you can ask for a referral and the vasculitis uk helpline can advise you on this. In the meantime I'd advise you to make a diary of your treatment(s) and how you feel as the consultants often don't communicate with each other! Do you have a 'lead' consultant? It can really help to have just one who regulates your treatment plan. I do hope you feel more yourself soon and do keep up the exercise and diet if you can - it'll pay dividends in the future. Best wishes. Charlotte

[Hidden in reply to DevonLottie]

Many thanks for reply. I do come under one consultant who seems to be calling the shots, he is a renal doctor. Thanks

[SusanCh]

Hi Graham I also have GPA & live in Chester. I help out with a Support Group for Vasculitis patients & we are due to meet on Friday afternoon at 2pm at the Royal Liverpool Hospital. You would be very welcome if you feel upto it. Where are you being treated? There is a Vasculitis Clinic at the Royal with Dr Janice Harper Consultant & Sarah Hardy Vasculitis Nurse. I was just wondering if you had been referred there. It takes a while to get everything under control. Dr Harper trained as a renal Doctor so is very experienced in this aspect. Best wishes Sue

[Hidden in reply to SusanCh]

Thanks for the reply, youre not far from me at all. I'm being treated in Aintree hospitals north of the city. O would love to come on Friday, not sure if.om up to it right now, will the session be minuted or videoed as Id really appreciate the information from it if I can't make it in person. Graham

[SusanCh in reply to Hidden]

Hi Graham I can understand if you are not up to it tomorrow. Hospital checkups can take over for a while till you are sorted. I'm afraid we don't have the option to video the session but if there are any leaflets etc, I will pick them up. We have about 3 meetings a year so hope you can come to the next one. I know Aintree has a multi discipline clinic so you should be in good hands. If you want to message privately with your address, I can send booklets to you. Good luck Sue

[Keithtim10]

Hi Graham

I do sympathise reading your post as i was diagnosed with Wegeners Vasculitus in Nov 2015 and it left me with Stage3/4 CKD as it scarred my kidneys.I had a plasma exchange and loads of steroids due to very low GFR .I then had 6 months of CycloInfusions but my white cells were struggling so i was put on Rituximab last christmas which following a relapse has brought me back into remmission and i am due to have second batch in June this year.

I feel ok even though still on Steroids and eating too much i do find it hard sometimes and get depressed due to thinking about the condition but i am under some superb consultants at Calderdale Hospital and working with St James Leeds Renal Unit who all monitor me very closely.The best advice i can give for what its worth is talk and ask questions about the condition i felt easier now i have a handle on the condition but always aware of a relapse.

Chin up Graham.

[Hidden in reply to Keithtim10]

Many thanks, my kidneys are at stage 2 at the moment with a gfr of 72 as per last blood test, next blood test due this Friday. I do feel a lot better myself since the tresrment started. Did your gfr improve after the initial medication? Thanks again

[Keithtim10]

Hi Graham yes my gfr was nearly in single figures at the start and i was not very well but at my last result a few weeks ago it was 41 so its certainly better but it carries its problems and i am careful what i eat to help.Ok